I sat in the foyer with my children waiting for Jon to talk the young girl at the counter into letting us in for free even though we left our membership card at home. The kids prattled excitedly about the exhibits we were going to see in the science museum and the snacks I had packed in our bag.
A little girl, about six maybe, ran up to the pram and peered in to see the baby.
Her jaw dropped and her eyes almost bulged as she stared at the tube coming out of Kaylee's nose.
I could see this yellow tube and the white tape fixing it in place had all but eclipsed the pink cheeks, long lashes, dark hair and pink bow in her mind - she didn't notice the baby, just the tube.
Her eyes oogled at the small bundle wrapped in the pink blanket against the cold of the blustery, wet autumn day. She followed the tube to it's source, the purple pump and the bottle hanging upside down.
There was no question asked, no comment .... just staring.
After many minutes she was called away by her family who were leaving the museum and turned, without a word. Not even acknowledging the existence of the family and the baby behind the tube.
Later that afternoon a little boy, perhaps four, looked in the pram. He looked at me and asked what the matter was with her nose. I knelt down and explained that Kaylee was born a bit sick and can't eat with her mouth so she has a very special way to get her food through this tube right down into her tummy.
"Uhhuh" he said
then ran away to play on the interactive exhibit with the other kids.
And that is why I teach my children not to stare.
Showing posts with label Feeding Tube Awareness. Show all posts
Showing posts with label Feeding Tube Awareness. Show all posts
Friday, April 27, 2012
Thursday, April 19, 2012
The techie stuff and frequently asked questions
What is a fundoplication and why does Kaylee need it?
In the context of Kaylee, a fundoplication is a surgery to prevent reflux. The valve where Kaylee's stomach and oesophagus join does not work very well.. Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't. This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery. The first is that her reflux is extreme. The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit). Vomit in the lungs is not great. It effectively starts digesting the lungs. A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet. In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc. Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being. The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome. Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux. Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all. Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.). Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.
The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus. This closes up the opening somewhat and prevents reflux. Kaylee should be able to have food in her stomach without fear of aspirating. She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally". It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.
What is a gastronomy and why does Kaylee need it?
All her life Kaylee has been fed using a feeding tube of some sort. Currently she is fed via an NJ tube. I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems. And it is a pretty long list actually. Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc. Kaylee is unlikely to start feeding orally in the very near future. Not enough to sustain her anyway. There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her. So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into. It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly. It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air. While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes. Without a tube, Kaylee would not survive. A tummy tube has the fewest negatives and the most positives. We are getting the tummy tube. A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.
When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule. We are thinking a couple of weeks at this stage
What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area. While I have no desire whatsoever to move permanently away from Tassie, it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment. Staying here with our friends has also been a time of rest and healing for us. Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders. Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality. We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one. We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries. The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals. Home really is where the herd is!
In the context of Kaylee, a fundoplication is a surgery to prevent reflux. The valve where Kaylee's stomach and oesophagus join does not work very well.. Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't. This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery. The first is that her reflux is extreme. The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit). Vomit in the lungs is not great. It effectively starts digesting the lungs. A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet. In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc. Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being. The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome. Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux. Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all. Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.). Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.
The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus. This closes up the opening somewhat and prevents reflux. Kaylee should be able to have food in her stomach without fear of aspirating. She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally". It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.
What is a gastronomy and why does Kaylee need it?
All her life Kaylee has been fed using a feeding tube of some sort. Currently she is fed via an NJ tube. I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems. And it is a pretty long list actually. Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc. Kaylee is unlikely to start feeding orally in the very near future. Not enough to sustain her anyway. There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her. So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into. It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly. It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air. While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes. Without a tube, Kaylee would not survive. A tummy tube has the fewest negatives and the most positives. We are getting the tummy tube. A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.
When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule. We are thinking a couple of weeks at this stage
What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area. While I have no desire whatsoever to move permanently away from Tassie, it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment. Staying here with our friends has also been a time of rest and healing for us. Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders. Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality. We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one. We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries. The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals. Home really is where the herd is!
Friday, March 23, 2012
A tale of tubes and tanties
There are two basic feeding tubes that go through the nose.
One is an NG tube which passes through the nose into the stomach. This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason. Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go. It is not that hard to do and a "lay person" can be trained to do this at home.
The other tube is an NJ tube. This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine. It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ. This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place. Do not try this at home kids.
Kaylee has the second of these two tubes.
This is not a fact that I relish.
I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door. In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.
Because that's what us parents do.
We advocate for our kids.
But Kaylee needs this NJ tube. I am convinced beyond a shadow of a doubt and believe me I took some convincing. I was a very hard sell. They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day. They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray. There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid. They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively. They had to work hard to convince me that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.
The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out. The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs. And research and experience shows that Kaylee's reflux is only going to get worse.
So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.
Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth. We will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball. It will mean no more NJ.
This is our next step.
And I am very ready to take it.
We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn. So we are going home to wait and come back to Melbourne and do this thing. And I will not be sad to say goodbye to our NJ.
One is an NG tube which passes through the nose into the stomach. This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason. Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go. It is not that hard to do and a "lay person" can be trained to do this at home.
The other tube is an NJ tube. This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine. It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ. This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place. Do not try this at home kids.
Kaylee has the second of these two tubes.
This is not a fact that I relish.
I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door. In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.
Because that's what us parents do.
We advocate for our kids.
But Kaylee needs this NJ tube. I am convinced beyond a shadow of a doubt and believe me I took some convincing. I was a very hard sell. They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day. They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray. There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid. They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively. They had to work hard to convince me that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.
The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out. The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs. And research and experience shows that Kaylee's reflux is only going to get worse.
So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.
Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth. We will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball. It will mean no more NJ.
This is our next step.
And I am very ready to take it.
We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn. So we are going home to wait and come back to Melbourne and do this thing. And I will not be sad to say goodbye to our NJ.
Monday, February 13, 2012
Tube Feeding and Health Professionals
The last topic I am going to cover (late) for Feeding Tube Awareness Week is feeding tubes and health professionals. For the most part I have been SO spoiled with my health professionals. We have hit a few bumps in the road and there is one particular intern in Hobart who WILL NOT be trying to place an IV into my kid again EVER. But there are quite a few who deserve boxes of chocolates, gold stars and halos made out of glittery pipe cleaners. If you happen to be a health professional and your deepest heart's desire is to be deserving of gittery-pipe-cleaner-halo status, here are a few do's and don'ts that will help you get there:
DO....
....recognise the expertise that a parent brings to the table. Over and over again I have been told by my gold-star doctors and nurses that while THEY have medical degrees and know lots of clever stuff, I am the expert in Kaylee. I don't know the medical terms for things and half the time I don't know exactly what I am looking for or even what I am looking AT, but if I say something is not right it is worth checking out because I am with the kid 24 hours a day.
....boost the confidence of the parent wherever possible. I have raised 5 healthy children through baby-hood, I have a degree, I have worked in animal care so I am used to using syringes and measuring feeds etc....and taking home my baby with a feed pump TOTALLY SCARED THE PANTS OFF ME. Because my doctors and nurses and care manager and everyone else on my team had faith in me, I felt able to step up and take the reins which made things so much better for Kaylee and our family.
....recognise that what is sustainable in the hospital may not be sustainable in a home environment. When we came into the Children's Hospital this time around the ICU nurse was perplexed to see that Kaylee's feed rate was 32ml per hour over 21 hours a day. Why on earth would she have 3 hours a day off the pump? I giggled and pointed out that at HOME it can be quite handy to be able to go for a walk or take her up to an appointment without lugging a feed pump! Parents get tired and need to sleep, there is no shift change or hand-over at home and family life continues regardless of feed pumps
....treat EBM like GOLD. I work VERY, VERY HARD to supply Kaylee with expressed breast milk. If it gets wasted through carelessness or ignorance....I am likely to kill the waster a thousand different ways in my head. Seriously, be careful with the BM.
...fake confidence. While tube feeding is reasonably common, I know that NJ tubes and EBM is not. A doctor or nurse who confidently asks questions and lets me know that he/she is interested in learning and is totally sure that they and I will work this out together makes me feel safe. If their eyes widen and they start stammering and stuttering and get all flustered. If they use whiny tones about what they don't know when talking to co-workers or supervisors within my ear-shot. If they completely FREAK OUT then I don't feel quite so safe. It is possible to be confident without being arrogant. It is possible to be open to learning while still giving an air of "Oh I totally know what I'm doing here and I am totally NOT going to kill your kid if you go to sleep". So yeah, confidence is good.
....refer patients/parents to support groups. Medically, tube feeding is not a huge deal. Socially and developmentally it completely is. Getting to know other people who have had to tape stuff to their kid's face daily is a very important thing for a tubie's parent. Getting to know tips and tricks to stop tubes being pulled out and sustain feeding schedules is invaluable. Lots of health professionals counsel parents to "stay away" from the internet. It is worth realising that (a) they won't and (b) there are excellent resources out there. Start by giving them sites like
tube feeding awareness
tube feeding awareness on Facebook
tube fed kids
....back up other health professionals, especially the nurses. Whenever I am in hospital I am putting Kaylee's life into the hands of the doctors and nurses there. The nurses are the ones responsible for the day-to-day care of Kaylee and if I have no confidence in their abilities I cannot sleep, shower or pee with peace and confidence. If you have an issue with a co-worker, take it up with the co-worker and not in my earshot. Help me pee with peace and confidence.
....maintain an open line of communication. Being able to ring and talk to a doctor has prevented us from having to come in to hospital numerous times.
Don't...
...ask a parent to defend a diagnosis or course of treatment. Check the file and make a phone call by the time a parent comes in to hospital they are usually exhausted and frazzled, give them a break. We are doing the best we can.
...walk in to a patient's room at 4am and ask the parent what the diagnosis is and why the child is on the current course of treatment. There's a little thing called hand-over that should have happened at the start of shift. Parents should not have to educate you at 4am.
DO....
....recognise the expertise that a parent brings to the table. Over and over again I have been told by my gold-star doctors and nurses that while THEY have medical degrees and know lots of clever stuff, I am the expert in Kaylee. I don't know the medical terms for things and half the time I don't know exactly what I am looking for or even what I am looking AT, but if I say something is not right it is worth checking out because I am with the kid 24 hours a day.
....boost the confidence of the parent wherever possible. I have raised 5 healthy children through baby-hood, I have a degree, I have worked in animal care so I am used to using syringes and measuring feeds etc....and taking home my baby with a feed pump TOTALLY SCARED THE PANTS OFF ME. Because my doctors and nurses and care manager and everyone else on my team had faith in me, I felt able to step up and take the reins which made things so much better for Kaylee and our family.
....recognise that what is sustainable in the hospital may not be sustainable in a home environment. When we came into the Children's Hospital this time around the ICU nurse was perplexed to see that Kaylee's feed rate was 32ml per hour over 21 hours a day. Why on earth would she have 3 hours a day off the pump? I giggled and pointed out that at HOME it can be quite handy to be able to go for a walk or take her up to an appointment without lugging a feed pump! Parents get tired and need to sleep, there is no shift change or hand-over at home and family life continues regardless of feed pumps
....treat EBM like GOLD. I work VERY, VERY HARD to supply Kaylee with expressed breast milk. If it gets wasted through carelessness or ignorance....I am likely to kill the waster a thousand different ways in my head. Seriously, be careful with the BM.
...fake confidence. While tube feeding is reasonably common, I know that NJ tubes and EBM is not. A doctor or nurse who confidently asks questions and lets me know that he/she is interested in learning and is totally sure that they and I will work this out together makes me feel safe. If their eyes widen and they start stammering and stuttering and get all flustered. If they use whiny tones about what they don't know when talking to co-workers or supervisors within my ear-shot. If they completely FREAK OUT then I don't feel quite so safe. It is possible to be confident without being arrogant. It is possible to be open to learning while still giving an air of "Oh I totally know what I'm doing here and I am totally NOT going to kill your kid if you go to sleep". So yeah, confidence is good.
....refer patients/parents to support groups. Medically, tube feeding is not a huge deal. Socially and developmentally it completely is. Getting to know other people who have had to tape stuff to their kid's face daily is a very important thing for a tubie's parent. Getting to know tips and tricks to stop tubes being pulled out and sustain feeding schedules is invaluable. Lots of health professionals counsel parents to "stay away" from the internet. It is worth realising that (a) they won't and (b) there are excellent resources out there. Start by giving them sites like
tube feeding awareness
tube feeding awareness on Facebook
tube fed kids
....back up other health professionals, especially the nurses. Whenever I am in hospital I am putting Kaylee's life into the hands of the doctors and nurses there. The nurses are the ones responsible for the day-to-day care of Kaylee and if I have no confidence in their abilities I cannot sleep, shower or pee with peace and confidence. If you have an issue with a co-worker, take it up with the co-worker and not in my earshot. Help me pee with peace and confidence.
....maintain an open line of communication. Being able to ring and talk to a doctor has prevented us from having to come in to hospital numerous times.
Don't...
...ask a parent to defend a diagnosis or course of treatment. Check the file and make a phone call by the time a parent comes in to hospital they are usually exhausted and frazzled, give them a break. We are doing the best we can.
...walk in to a patient's room at 4am and ask the parent what the diagnosis is and why the child is on the current course of treatment. There's a little thing called hand-over that should have happened at the start of shift. Parents should not have to educate you at 4am.
Friday, February 10, 2012
A day in the life....
One of the suggested topics for tube feeding awareness week is what our day looks like. Every tubie's day will look a little different. There are those on continuous feeds like us and others who are bolus feeds (big lots at once rather than little bits constantly). There are some who are continuous over night and bolus in the day. There are some who can take some of their nutrition orally and just need to top up through the tube and those who are reliant on the tube for every bit of nutrition. Tube fed people are babies, toddlers, children, adults and elderly with a vast array of interests and commitments.
For us, this is a "typical day" before we came into hospital this time around:
7:30 ish meds, hang feed, clean up Kaylee (give her a bath depending on how much she vomited overnight), get dressed, express (often takes me about an hour to an hour and a half first thing), grab some breakfast (sometimes Jon makes me poached eggs on toast!) and start schooling for the day.
11:30 hang feed, express, help make lunch, feed the kids and get Andrew and Anna off to bed
1:30 meds, finish any schoolwork not complete, try and get something constructive done (like house work, cooking, paperwork etc.)
3:30 meds, hang feed, express (I often catch a nap while sitting up and expressing), help bring in the washing and fold it, help the kids with the end of the day clean up and get them bathed while Jon cooks tea.
7:30 meds, hang feed, family worship and story time, get the kids off to bed and help Jon clean up from tea
8:30 express
11:30 meds, hang feed (I usually hang a larger volume and add a cooler bag with cooler bricks so it will be safe to leave until morning
Sometime between 12:30 - 1:30am meds
Dotted inbetween that is holding Kaylee if she has reflux, cleaning up any vomit, changing nappies (Kaylee's and Andrew's - although Jon does most of Andrew's!), fitting in Kaylee's various therapies, being a Mum to my other kids, being a wife to that fantastic husband of mine who picks up all the slack and finding time to pee. Some of those meds need to be crushed up, suspended in water then measured out and others I can just draw up. I am hoping when we go home after Kaylee's heart repair we will have significantly fewer med times. Few days actually work out to be typical, but most days we get it all done and Kaylee always gets her feeds and meds.
For us, this is a "typical day" before we came into hospital this time around:
7:30 ish meds, hang feed, clean up Kaylee (give her a bath depending on how much she vomited overnight), get dressed, express (often takes me about an hour to an hour and a half first thing), grab some breakfast (sometimes Jon makes me poached eggs on toast!) and start schooling for the day.
11:30 hang feed, express, help make lunch, feed the kids and get Andrew and Anna off to bed
1:30 meds, finish any schoolwork not complete, try and get something constructive done (like house work, cooking, paperwork etc.)
3:30 meds, hang feed, express (I often catch a nap while sitting up and expressing), help bring in the washing and fold it, help the kids with the end of the day clean up and get them bathed while Jon cooks tea.
7:30 meds, hang feed, family worship and story time, get the kids off to bed and help Jon clean up from tea
8:30 express
11:30 meds, hang feed (I usually hang a larger volume and add a cooler bag with cooler bricks so it will be safe to leave until morning
Sometime between 12:30 - 1:30am meds
Dotted inbetween that is holding Kaylee if she has reflux, cleaning up any vomit, changing nappies (Kaylee's and Andrew's - although Jon does most of Andrew's!), fitting in Kaylee's various therapies, being a Mum to my other kids, being a wife to that fantastic husband of mine who picks up all the slack and finding time to pee. Some of those meds need to be crushed up, suspended in water then measured out and others I can just draw up. I am hoping when we go home after Kaylee's heart repair we will have significantly fewer med times. Few days actually work out to be typical, but most days we get it all done and Kaylee always gets her feeds and meds.
Thursday, February 09, 2012
Our Journey to Tubie Town
One of the topics for Tube Feeding Awareness Week is how we got here.
If you have read my blog at all in the last couple of months you probably know a bit about our journey thus far. If you are new to this blog try THIS and THIS post or the CdLS page for a description of Kaylee's condition and how we got where we are today. But I will start at the start.
When Kaylee was born I thought "Wow she is tiny. Those are some funky little hairy patches on her thighs I wonder what that means. She is beautiful. How am I going to get this tiny baby to latch and feed? How am I going to keep her warm?"
I am a long term breast feeder I guess, having fed 5 kids previous to Kaylee's birth. In fact, for the first half of my pregnancy with her I was still feeding Kaylee's older brother. Feeding my babies has always been one of the most pleasurable aspects of mothering a tiny baby for me. I treasured those moments when I would be forced to slow down and savour their tiny perfection as they guzzled greedily at my breast. For a couple of them, it required work and patience and time to get things working properly, but we always managed it and while I knew it would be a challenge with the tiny infant I had in my arms it didn't occur to me that we wouldn't have a "normal" feeding relationship - I just figured it would take some work. After some rather horrid afterpains I was curled up in bed with a tiny bundle of baby carefully expressing clostrum into her mouth. She lapped at it and opened her mouth but showed no signs of really wanting to attach. After a while we trundled accross to the hospital where I thought they would tell me what kind of syndrome she had and I would take her home to figure out the feeding thing....little did I know.
The next weeks - perhaps months - was a complete blur of hospitals, transports, tubes, wires and a million other interventions and experiences which I do not really care to relive. I know her feeding tube was placed sometime in there - perhaps during her first PICU stay the day after we flew in to Melbourne? That would seem to make sense. I expressed with dogged determination. I remember the first time I managed to express a decent amount of milk. It was the middle of the night and I was reading a message from my oldest daughter which read "Compared to my love for you the sky is like a dot". I carefully screwed the lid on my milk and RAN to Kaylee and cried out to her "Look baby, I made you milk!!" and he nurse very carefully started it going down her feeding tube and into her little tummy. And thus began my love-hate relationship with feeding tubes. As I said a few days ago to another tubie mama - feeding tubes, love that they keep my kid alive, hate every other dang thing about them.
Kaylee was a few days old when we made it up to the cardio ward. It had been a rough few days for both of us but she was finally stable. With the help of Sue, one of the lactation consultants, I put Kaylee to the breast but I have to admit my expectations were very low. I was completely blown away when she actually tried to feed!
It was a balancing act to put her to the breast to try and feed without exhausting her. A combination of a cleft palate, heart condition, poor suck and swallow coordination and poor muscle tone and control all due to her syndrome made feeding very difficult. Because she had the feeding tube, she was able to stay hydrated and well fed which gave her the best chance of learning how to feed for herself. Without the feeding tube, Kaylee would not have survived her first week. We did try her with a special bottle designed for children with special needs but she only got a few mls more than she did at the breast (8ml as opposed to 3 ml, and the bottle tended to try and drown her a bit which wasn't good) so I opted to keep trying at the breast instead because of all the other benefits of direct breast feeding and I had the option to do that because all her milk was getting into her anyway through her tube.
As I researched more and more about Cornelia de Lange Syndrome I learned that reflux was a major life long issue for most people with the syndrome and I became very proactive in asking for her reflux to be assessed and managed with this in mind. Because of the excellent care she received we had little trouble with reflux until after Kaylee's first cardio surgery. Unfortunately after her shunt was placed Kaylee needed to go on a medication which interacted with her reflux medication. She was still on a different medication but it was not as effective and Kaylee's reflux started messing with her heart stuff. Just as we had started going to 3 hourly feeds rather than hourly or continuous - which was a big step toward "normal" - we had to place an NJ tube instead of her NG tube. This is a tube which goes through her stomach and sits in her small intestine. I love the NJ tube because without it Kaylee's heart condition would still be requiring her to be in hospital. I love the NJ tube because without it Kaylee (whose reflux has gotten more and more severe) would probably vomit a large portion of what she was fed and would not be growing or putting on weight at the rate that she needs to so she can get ready for her surgery. I love the NJ tube because it keeps my baby alive! It gets my milk into her which has helped her stay reasonably healthy and grow delightful fat rolls. It means I can give her medicine without worrying about her vomiting it up or spitting it out. I can keep her well hydrated - a very important thing as dehydration could make her shut stop working. But I hate it for every other reason.
The NJ tube needs to be placed by a radiologist so they can take pictures of where it is which means if it gets clogged or kinked we need to go to hospital - and if that happens after hours (which, for some reason, it almost always does) we need to stay overnight until they come in the next day.
The NJ tube means that Kaylee must be fed small amounts continually. This means she does not get hungry - which SOUNDS good. But learning what hunger means and that one needs to eat to stop feeling hungry is something that most babies do without us really thinking about it. Right now Kaylee is not learning that lesson. The cycle of hunger and feeding also means that a baby wakes up and interacts with either Mum or Dad and uses mouth muscles (the same muscles used for speaking, chewing, swallowing saliva etc. - all things that Kaylee was going to find challenging anyway with her other issues) several times a day - and in some cases several times a night! The nerves that feel the sensations of hunger, being touched and held for a feed, milk being drunk, tummies getting full all send messages to the brain not only about food and eating but about where the baby's body is in space (sitting, lying, being touched etc) and the brain creates pathways with this information which we use every day for our whole lives without even thinking about it. To help Kaylee develop these pathways I massage her gums, give her skin-to-skin contact, put expressed milk on her dummy so she can experience taste (she used to suck her dummy but since her reflux has worsened Kaylee has largely lost her sucking abilities, we will have to re-teach her to suck). There are fabulous therapists who will help us with all of these things as we come to them. So as with most big medical interventions, there is the good AND the bad.
After Kaylee's heart surgery we will start doing more with her feeding tube. Trying out an NG which is a tube through her nose to her stomach (which I can learn to place at home, eliminating the need for quite so many hospital visits). We may have a G tube placed which goes through her the wall of her tummy into her stomach and sometimes (in the case of a GJ) into her intestines which would eliminate the irritation of a tube in her nose and throat. Perhaps we will be able to move to bolus feeds where we give feeds every few hours rather than continuously which would be wonderful. There is no reason why Kaylee can't start to learn to eat "normally" as we get her other health issues sorted out - but it will take her a while. In the mean time I will be able get all the breastmilk and medicines into her which she needs.
We have learned just how common the tubie experience is since we were introduced to this world. It isn't just people who are as unwell as Miss K. There are some people who look "normal" who lift their shirts and hook up a pump to their belly for a feed. For most who have them a tube is a life improving - if not life giving - measure and the best chance they've got at getting well. We have been blessed by the knowledge, support and information provided by other tubie families and support groups and it helps us make informed choices for Miss Kaylee, our little tulip.
So that's how we got here and this is where we are going for now. If you ever find yourself in a position where you are having to manage a feeding tube there are some links to resources at the bottom of our Cornelia De Lange page
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